Thursday Update (9/27/16)

How's this for cozy?

Job's morning echocardiogram again showed no clot growth or movement. I think everyone is slowly starting to breathe a bit easier. Each day that passes lessens the likelihood of growth or movement, although there will certainly be risk until the clot is (hopefully) reabsorbed.



It seems definite that Job will be on an anti-coagulant for the rest of his life. He's on a heparin drip through his PICC now and will be switching over to lovenox (which is actually a form of heparin) injections this afternoon. And in a few weeks when we, Lord willing, go home, he'll switch to an oral dosing (like warfarin). Baby aspirin just won't be enough for him as his clot factor is too high.

He's down to 7lpm on his hi-flow and seems to be doing well. If his sats drop or his work of breathing increases then he'll go up to 8lpm of pressure again or even back to BiPap.

Isaac is very happy to entertain his little brother and Job is very happy to be entertained by his big brother. Job is responding more and more to us, slowly resembling the little baby that we used to know.

Wednesday Update (9/28/16)

This is Job's current vascular map, showing where he has/had clots. Hematology is still doing their work up. He'll get another echo tomorrow. So far there is no movement or growth, which is hopeful.



Surgery doesn't seem to be a good option. The risk of surgery itself, post-op complications and the likelihood of "stirring things up" and creating new clots all present too high of risks to make it worth it for this size of clot.

Job is having a good day from a respiratory standpoint. He's been off BiPap for 16 hours and doing well. He's at 35% FiO2 (oxygen) and 8lpm of "pressure," delivering that oxygen on hi-flow. Perhaps tomorrow we'll try 6lpm.

Tuesday Update (9/27/16)

Job had very sad morning. He was NPO (no food by tube/mouth) so his tummy felt empty (even though he was on his D5 fluids - sugars and lipids) and he did not like it. He also got lots of blood draws and echos and exams so he was irritated because of those as well.

His lungs look much better and he's tolerating his respiratory support weans so he got an hour off BiPap and was on hi-flow instead. He switched away from the BiPap mask to a nasal mask because, as you can see, the mask was hard on his skin. He will get more and more breaks off of BiPap and on hi-flow if he keeps his sats up and his x-rays continue to show his lungs remain open.

He needed his LPA stent to get greater blood flow to his left lung but his recent echos show that his lung issues no longer seem to be plumbing issues. His team is hopeful that his heart function and pulmonary vascular flow will continue to improve with more time. There does not seem to be an arch issue as was originally speculated or anything else that needs a surgical fix. Job "just" needs more time.



He an echo earlier today to look at his atrial clot but official results aren't back yet. Unofficially, it doesn't look bigger. Part of the clot has adhered to the atrial wall but part of it looks "floppy". The concern is that this floppy part could dislodge and cause great problems. While a clot could be problematic for anyone, the body has an amazing clot filter in the lungs. For typically developed hearts, blood is pumped through the atrium to ventricle to the body and then returns through the lungs to begin the process again. For Job, with his single ventricle heart, there is no filtering process. So his lungs can't catch a traveling clot.

The risk today is not greater than it was last night. But having a slightly better understanding of the situation has certainly impressed upon me the gravity of the concern. This is scary.

His heparin regimen is not to break up the clot but to prevent it from growing and to organize it, to make it tighter, so that the body can resolve it. We want his clot to stabilize and then be reabsorbed by his body. We certainly do not want vein/artery occlusion or stroke or any such clot complications.

Job's body has shown us that its stress response is to clot rather than bleed out. This clot is very likely because of his RA lines, a clot forming and sticking to the intrusive plastic of the lines. We think it is a consequence of how much support he was/is on rather than a symptom, showing us he's getting sicker.

Job went to Interventional Radiology this afternoon for placement of his PICC line. Job is always a hard poke for lines and he goes through his PIVs quickly, so despite the increased risk of clot at the PICC line site, he needs the more stable access it will provide to give him his meds and for the greater ease of blood draws.

After nine long days of being unable to hold Job, we were finally able to Sunday night. He likes being held but we probably enjoy it even more than he does.

I don't really know how to talk about his condition right now. We're sad, very sad. Concerned too. I know it's a good thing to look for progress and be excited for the progress he has made, but right now it just hurts to hear really happy, positive, hopeful comments. I don't want to minimize progress, but Job's situation is very critical and we're very aware of that.



We know God has a plan for Job that will be for our good and His glory. But it's currently a very painful plan. We are now expecting weekS in the CICU.

Tomorrow will bring another echo and anti-coagulant levels and perhaps additional clarity. He's getting food again, he won't get poked now that he has a PICC line, and we expect he'll get several BiPap nasal mask breaks, so he should be a much happier guy tomorrow.

Monday Update (9/26/16)

Today's echo showed Job now has a blood clot in his atrium. He's on a full therapeutic dose of heparin, a blood thinner. The clot could move but he's somewhat stable right now on heparin. There have been and will be many more conversations between cardiologists and interventionists and surgeons and hematologists but I don't think anything will happen tonight.



Tomorrow's echo will tell us a lot about what our next steps will be. If the clot moves or grows that likely means another open heart surgery to remove the clot.

Job has made (very slow) progress this week. It feels difficult to do, but we want to be excited for him and acknowledge this. Last Monday evening we were very worried about him. Things needed to change and they did change. He has gone down on many meds and some of his respiratory support. His sedation balance is better. His heart function has improved a bit. His sats are better.

But now we have a brand new set of scary, dangerous problems.

Sunday Update (9/25/16)

Over Saturday and Sunday Job experienced so many changes in his care!!



He got his RA lines (central IV lines, directly in his heart), pacing wires and chest tube out today!! He has his art line (right hand) in, for blood draws and constant blood pressure monitoring (although he's been working on pulling it out, so it wouldn't surprise me if he list it any time soon) and his new PIV line (left hand) for his precedex and general access if need be. Doesn't he look practically naked now?

He is now off milrinone (which aided the squeeze of his heart) and taking his lasix and spirnalactone (the two diuretic meds he was on pre-Glenn) and omeprazole (a digestive med he was on pre-Glenn too) and dilaudid and clonidine (narcotics) by ND (feeding) tube! His only drip is a minimal dose of precedex (a "calming," anti-agitation med) and that's really to just keep him from ripping off his scuba mask. I can hardly believe it!

These are all great changes and I'm so happy for him that he got his "chest stuff" out. He will be so much more comfortable now!

He is still on a great, great deal of respiratory support. And his heart-lung balance is certainly insufficient, so he's not getting out of the hospital any time soon, but it's fantastic to remove several annoyances for him (and reduce the risk of infection)!

Friday Update (9/23/16)

From a cardiac and/or respiratory standpoint Job is doing much better. In fact, he's doing so well that perhaps we were a little too aggressive and made too many changes too quickly. This, coupled with restless sleep or little sleep seemingly sent Job into one of the most delirious episodes he's had yet.



When I first walked into the room earlier today Job looked absolutely awful. He was cross-eyed, but his eyes kept rolling back into his head. He couldn't stop flailing his arms and legs, but his movements were so uncoordinated. He was feverish too. It took about two hours to calm him down enough so he could sleep. But thankfully, he finally slept well and eventually woke up in a more lucid state of mind. Making sure he gets good sleep will be a priority this week.

We (I use that term quite loosely) backed off on some of his weans because he showed us he's not ready to be pushed so hard. He did well all day on hi-flow and off of CPAP (yay!!). But this evening right before the boys and I left the hospital (siblings are kicked out at 8pm) he randomly desatted in his sleep. He immediately got deep suctioned which didn't help like it usually does, so he got an x-ray to check his lungs.

We're very concerned about his atelectasis (lung collapse) and even though the x-ray looked good (no re-collapse) the decision was made to put him back on CPAP to be extraordinarily careful. He'll probably stay on it all night just to give his lungs the extra support of positive pressure to make sure they stay open and to relieve some of the work of breathing while he's still weak.

I talked to the NP about it for a while because it seemed like a disappointing step back, but we can't push Job too hard. This is how CICU life goes, after all: one step forward, two steps back. An additional factor in the decision was the high acuity on the floor tonight. Job will absolutely get the care he needs, I have no qualms about that! If his nurse were to call for someone they would be there immediately. But giving him the perhaps unnecessary extra support of CPAP tonight will just lessen a bit of the load on the floor tonight as Job will (at least presumably) need less assessment than he would if on hi-flow.

I want to make note of the special blessing it was this week that Job's primary cardiologist, Dr. Files, was the in-service cardiologist in the CICU this week. Of all the possible weeks for him to be on the floor every day, I am so grateful it was this week. He knows Job best (although really there isn't anyone involved with hearts at SCH who doesn't know Job very, very well) and he is such a very kind and wise man. He took special effort to direct Job's care this week and I will always be so grateful.

Likewise, it was simply wonderful that one of our favorite nurses, Alena, was Job's nurse Tuesday through today. She even picked up an extra shift today, surprising me! to care for Job an extra day. I had teased that I'd call a Code Pink (missing persons) on her if she ever left the hospital and then she showed up again today!

I can't think of another nurse who could have been a better fit for Job's/our needs this week. She advocated for Job and loved on him and answered my million questions. Thanks to her careful and oh so patient teaching, I feel like I might finally be starting to understand where Job is at and how some of his meds work. And she even made him a mobile! She had discovered that Job really likes watching the live cam of the Monterrey Bay Aquarium jelly fish tank and shark tank and so last night she found these sea life pictures and cut them out and hung them for him. Right now he's too weak and tired to play with them or look at them much, but it was such a sweet gesture on her part.

There are many such ways that we were specially cared for this week, but those two people were a particular blessing I don't think I've mentioned yet.

If Job has a good day tomorrow I might just left myself start to feel cautiously hopeful about his prognosis!

Thursday Update (9/22/16)

The page for today's updates in ascending order:

8:30am
Can we just forget everything else about Job's health, long-term and short-term, and celebrate this moment?? I could not be more thrilled right now.

Cath #3 Results (9/21/16)

A cardiac catheterization is the best diagnostic tool available to assess cardiac function and the pressures and flows within the heart. An echocardiogram (an ultrasound of the heart) is of course less invasive but can't always give the best assessment. The "cath" is called such because it entails a thin piece of tubing (the catheter) inserted into an artery or vein (in the groin or neck or, apparently, liver). A cath can also be interventional, allowing the ballooning or stenting of a narrowed artery or vein.

Job recieved a LPA (left pulmonary artery) stent (which was described as a loop of fancy chicken wire). This will keep his LPA from further narrowing and it was placed where the green circle is. It's hard to see the narrowing in this particular picture but it was significantly inhibiting the LPA flow. The tissue around the stent will quickly grow around it, keeping it in place, and it won't grow with Job, so it will eventually need dilated (or replaced in a future open heart surgery, such as his Fontan).

Because Job is always one for fun extra surprises, he also had a clot where the purple circle is. It was dispersed with heparin and he will shortly begin a lovenox regimen (and we're old pros at lovenox injections!).

And because we're often asked, the orange circle highlights one of his sternotomy wires, keeping his cracked sternum closed.

Miraculously, Job's aortic arch repair did not need repaired as seemed likely. I think we're still in shock, actually. This is such wonderful news!

Job is not satting as high as we would like, even after this intervention, but it bought him a few days to get his sats up. His heart function likewise needs to improve, but again, he can have a few more days to accomplish that as well.

Surprisingly, Job was extubated in the OR and is on the BiPap at present. Reintubation is still a possibility but if he has a good night then that possibility diminishes. We want him to ween to CPAP then hi-flow then nasal cannula then no respiratory support but, because this is Job we're talking about, it will take some time.

Tomorrow Job will get another ultrasound to look at his diaphragm plication which is possibly coming undone. If this is the case he would get to have surgery tomorrow to fix it, but it is extremely rare for this to be necessary (but again, this is Job... He never takes the easy path).

Unfortunately his plication (which was necessary because of his nerve damage sustained in the Norwood) makes his ability to take deep, full and effective breathes more difficult at present. Around the age of two his thoracic/intercostal musculature will be strong enough that the plication will no longer be such a factor, but it very much inhibits him now. If his phrenic nerve was going to heal, it would have healed by now. So the left side of his diaphragm won't ever be able to move (even if it hasn't been plicated, or stapled down).

Job has yet to fully come out of his anesthesia and is pretty well sedated and will be through the night.

I'm not entirely sure what his goals will be for tomorrow. I think it will largely be a day of rest, to hold steady on the small forward steps he he has made and to assess his goals for the rest of the week.

We are so very relieved that Job has seemingly turned a corner. He was so very sick and had us all extremely worried through Monday. His progress has been tentative but to even use the word "progress" is thrilling. He certainly has a long road ahead of him, but we've done long hospital stays before and we can do one again.

Wednesday Morning Update (9/21/26)

This morning Job was awake, looking at us and listening to us!!! For 15ish minutes! But it wore him out and he's back asleep now.

This means his delirium is largely gone and his sedation balance is being better managed (that sounds like an indictment of his team, but it's not! It's just a hard balance to find).

Job got a NG tube on Sunday and has intermittently taken feeds of 5mL/hour as he's been able to digest them. He's still on his D5 (basically sugars) drip but since things didn't go as expected and he's still sedated and ventilated he can't feed by bottle. And his team didn't want his digestive system to go any longer without being reintroduced to the concept of food. He hasn't always been able to digest the food (depending on how sedated he is) so he's gotten several breaks, but he's done pretty well. But he's NPO (no food by mouth) as of 6am because of his cath today.

He just got his daily x-ray and it showed improvement in his lungs, so we're headed in the right direction there. They need to expand and continue to dry out but should as time passes.

We'll likely spend the morning talking to his team and signing consents and then we get to wait (not anxiously?) for the several hours during his cath this afternoon. Just like during his last cath, we're so desperate for the results of the cath that it's easier to send him off to the cath lab than it might usually be.

We wanted his Glenn to go well! We didn't want to be in the situation, waiting and wondering, but it will be so good to get some answers today.

Seth's Update (9/20/16)

Here are a few quick bullet points about Job's biggest issues/prayer needs:

-The squeeze of his heart (aka "heart function") has not been very strong since the surgery. It seems like the doctors don't exactly know why.

-His Aortic Arch, according to recent echo images, appears to be even more narrow than before the surgery, despite the surgeon's attempts to repair/widen it. If (or when) they do a cardiac catheterization, it will be for the purpose of once again widening his arch.

-His sedation needs, due to his intense pain, must be balanced with his need to breathe deeply on his own. According to Dr. Files, the team must do a better job of managing this balance the next time they attempt a successful extubation.

-His pain and discomfort are causing him to have episodes of severe oxygen desaturation, hence the need for so much sedation/pain meds.

-Autumn and I are pretty shaken up at this point, but Job needs us to be focused, hopeful, worshipful and ready for the day.

In Christ's name, Amen

Update (9/20/16)

Job had a pretty good day today. He is less delirious, more consolable, presumably because his pain is becoming a little more manageable. His sedation/pain medications have been weaned a bit (albeit from very high amounts yesterday). He seemed to have a more peaceful day. He even opened his eyes and looked at us for a few seconds (as opposed to his eyes being rolled back whenever open).

Today's echo images confirmed the narrowing in his aortic arch and his need for a cardiac cath. There are some significant "access" issues, as his right leg is totally blocked by a clot and his left leg is mostly blocked (complications from previous caths). At this point, their first choice of access is through the liver. It will be both exploratory and possibly interventional, perhaps resulting in a balloon or a stent in the arch. We are cautiously hopeful about this procedure. It's a major intervention, filled with risks but with significant potential benefits. He is scheduled for second case tomorrow, which means around 1 pm.

His depressed heart function is still a concern, but could be caused, at least in part, by the narrowed arch. We'll see.

We know that many of you have been praying all day, particularly for our peace and strength. Thank you so much. God's kindnesses have been apparent to us too many times to enumerate.

Today was a small but definitive step in the right direction. Praise God.

-Seth

A Sad Day (9/19/16)

I don't even know where to begin this update or how much to say.

Job is not doing very well. There's probably no other way to say it. But there is still so very much support that can be offered to him to help his body as he struggles. He's not in immediate danger.

We need to give him more time, absolutely. But we're getting to the point where we need to start exploring what is going on with his little body because he is not responding as he should be.

Most Glenn patients extubate in the OR or shortly thereafter and extubate to minimal respiratory support. Job is three days post-op and is ventilated and on a great deal of respiratory support. Why?

We're hopeful that he just needs more time to recover from surgery and his heart function will continue to improve and that he will get off the vent soon and his sats will improve. It's possible that time is all he needs. But the longer he takes the more concerned everyone gets and soon we need to explore what else it could be.

Job's Sunday morning echo might have shown problems with his aortic arch repair. He's getting another echo tomorrow morning and the results of the echo will probably tell us a lot about what the rest of this week will look like. A cardiac cath is a very likely possibility in the next few days to further explore Job's heart function if he doesn't improve in the next 24ish hours.

Job did extubate today but after about an hour needed reintubation. We think that his extubation failure was mostly a sedation problem rather than a heart problem or a lung problem. Job is in so much pain from his headaches and so uncomfortable from the breathing tube that he needs a lot of sedation. But he needs to be "awake" in order to extubate and breathe on his own. But he's so delirious from the balancing of his pain meds and sedation that he can't wake up. It's a hard balance to find. So he's off propful again and on dilaudid and we'll try again possibly tomorrow.

Job's left lung collapsed during extubation, likely because of the pressure change from invasive-ventilation (what he's had - the nasal breathing tube) to non-invastive ventilation (no breathing tube but very high support, higher even than hi-flow).

During his brief extubation!

While extubated Job had some secretions and he wasn't awake enough to cough them out, even when they suctioned, because his sedation was so deep (but again, it needs to be deep because he is so incredibly irritated and therefore agitated when he wakes up). If he had been able to cough, he probably could have kept his lung from collapsing and therefore from reintubation.

While reintubating, he got "bagged" and this popped open the top of his left lung. Overnight we'll diurese the bottom of his lung open in addition to his ventilator setting tailored to give him extra pressure support to pop it open.

The boys got to come visit today, which was really, really nice. They did not want to go to co-op this morning but did such an amazing job of being cheerful and obedient and joyfully attentive once there. I thought I couldn't be more proud of them or more grateful, but then they got to the hospital and had to spend three hours sitting in the back of Job's room basically alone, drawing and watching a TV show while I tried to help Job calm down during and after his extubation trial. That wasn't the plan for the day at all! We were going to play together and talk to Job! But they instead sacrificed their desires and served their baby brother and I.

When Job calmed down (well, was heavily sedated and muscle relaxed, following intubation) and Daddy came, they got to talk to him and it just amazes me how comfortable they are looking at his poor disfigured, swollen, scarred body. They love him so very much and are so thrilled to see him, every time. I don't know how, but they just don't even notice his incision or tubes and wires. In fact, they even call him "the cutest baby". It's hard enough for me to look at Job right now and it's such a blessing to me to watch them interact with him here post-op so fearlessly and with such adoration. I have been so concerned about how they would do through this trial over the last seven months but they have been so resilient - it is such an answer to prayer. They help me so much physically and emotionally.

All five of us!

Please keep praying for us. People remark on our strength often but we have nothing in and of ourselves. Your prayers are, through God's strength, sustaining us. We feel very weak right now. This is scary and sad. It's going to be hard waiting for answers these next few days.

Afternoon Update (9/17/16)

Job didn't have the post-op recovery nor boring night that we had hoped for.

He came out of surgery breathing on his own on the spontaneous setting on the ventilator. This setting allowed him to do most of the breathing work on his own, even though he was also at 100% oxygen (whereas room air is considered 21%).

Sadly, his sats, never as high as we wanted to begin with (well, specifically after surgery) dropped dramatically into the 50s in the middle of the night, proving he wasn't ready to breathe on his own.

The most acute patients are in rooms directly outside the attending's office. And Job had a steady stream of medical personnel in his room all night.

After his desat, his team decided to take him off of the spontaneous setting on the ventilator and increase his vecuronium (muscle relaxant) significantly, as well as his dilaudid (narcotic).

Job's heart function following surgery was and is still depressed (so he's on milrinone and was on epinephrine to help his "squeeze") and last night he didn't have the ability to work as hard as he needed to in order to maintain his sats. The idea was that if completely muscle relaxed (so his body isn't "wasting" energy), with the ventilator turned on to full capacity, Job could rest and recover a bit more and maybe his sats could recover too. And as of this afternoon it seems to have worked!

You and I only have to get used to switching our circulation once: from fetal to, well, typical. But Job will have to adjust to five different circulations: fetal to typical, typical to Norwood, Norwood to Glenn and someday Glenn to Fontan.

This is a very big adjustment for him and his little body was struggling to keep up with the work of breathing on depressed heart function, as mentioned, in addition to the normal complications of recovering from the trauma of surgery.

One such issue is his positive fluid balance. His little lungs can't function correctly with the excess fluid in them, so he needs help getting rid of that fluid through diuretics, namely lasix (item one). We need Job to have a negative fluid balance (that is, we need him to pee!) before we can move forward.

Job's hematocrit (concentration of red blood cells) was low as of this morning and so he received a transfusion (item two). In very basic terms, this means he received more red blood cells. This helps his capillary leaks heal (which helps his fluid balance) and it gives his hemoglobin a better ability to carry more oxygen around to his tissues. This made a big difference for him as he recovered from rhino a few weeks ago and the mention of it this morning made me hopeful for a similar result. I was afraid to get too excited, because of course recovering from rhino and from surgery are very different animals, but the crit infusion seems have been one of several factors in Job's turn around. SV kids (single ventricle) often respond well to crit infusions. In Job's case, it likely helped him come off of his blood pressure meds (vaso and epi).

As mentioned, in the middle of the night, Job's hard work caught up to him and he needed to do less work. His vecuronium (muscle relaxant) gave him that break, but now that he's a few more hours post-op he will be weened off of his vec so that his body can begin to breathe on his own again (item three).

I mentioned Job's new Glenn circulation and the big change that it is for his body (but I really do need to write out WHAT the Glenn is... Maybe tomorrow's project?) but in contrast to any other cardiac surgery, it is important for Glenn patients to get off the ventilator as quickly as possible. This is because the Glenn now sends passive blood flow to Job's lungs. And his lungs need the negative pressure of his diaphragm (or in his case, only the right side of his diaphragm) pulling his lungs down to better receive his passive flow. The positive pressure of the vent, pushing air into his lungs, makes it too hard for the blood to optimally drain through Glenn (that is, from his SVC to PA). The ventilator, however, provides positive pressure on his lungs and therefore Glenn patients do much better extubated (item four).

And of course, we want Job's blood pressure to remain stable as this is a primary indication of his heart function (item five). Stable blood pressure helps his profusion too, bumping his sats higher.

Surgery Day!! (9/16/16)

Today we send our baby off for his second open heart surgery (the Glenn).

Updates:

7:06 am
Here we go! Last consents and instructions! Goodbye kisses too.

8:36 am
Just got a page (I guess I fell asleep, sitting here in his empty room, waiting patiently-ish). They have now opened up Job's chest.

It will likely take them an hour to open his chest and clear away all the scar tissue from his last surgery before they can begin their heart repair work. Isn't that fascinating? It surprised me!

They no longer give updates throughout the surgery, but they page when they start and when they end, so we don't expect to hear anything else for a few more hours.


5:28pm
Job is out of surgery and recovering in is CICU room! He is stable and it sounds like the surgery itself went well.

It took a few hours longer than they were expecting and he has not been as immediately responsive to his repairs as they were hoping.

These next 24 hours will hopefully be "boring" as he's well sedated, but we expect tomorrow will be a difficult night for him. And then hopefully he'll be able to meet his goals in the coming weeks (it almost certainly will be a longer inpatient stay than we were wishing for).

We are so grateful and relieved that he made it through surgery! And we're glad to now look at this new stage of recovery.

The Day Before Surgery Pt. 2

While Seth worked, I had Ezra and Isaac with me today at the hospital. Job had a really hard day, medic needs-wise, and the boys had a really hard day, obedience-wise, and Seth had a really hard day, work-wise. And I got to try to juggle all of the moving parts. Even merely few hours removed from the most intense stress of the day, I'm wondering how I was able to handle all of that. I suppose the answer is, as always, "but God".

My favorite part of the whole mostly-awful days was when we all squeezed on top of each other in the recliner to watch a movie. A last "last for a while".

Our hour of cuddles notwithstanding, today was one of the most stressful and difficult days we've experienced. I am so glad it's almost over. I'm so glad for the freshness tomorrow brings.

Every aspect of today was just hard, culminating in a very sobering discussion of just how complex Job's aortic arch repair will be with his surgeon, Dr. Nuri. It sounds like Job will also have a longer recovery than we were anticipating because of this complexity.

Snuggles with my three boys!! 

Job was pushed up to first case, which means I'll walk to the OR with him around 6:30am. We are expecting about 7-8 hours for anaesthesia and surgery, so perhaps we will get to see him around 2:30pm.

The Day Before Surgery Pt. 1

Job is having a bit of a hard day. His oxygen needs have increased but he still keeps desatting lower and lower. He got so excited to see his brothers when we first got here that he dropped down to 53% oxygenation!! and struggled to come up, even on 2 lpm of oxygen support. I think he barely avoided a RRT intervention (rapid response team).

Three little boys were very happy to be reunited today! (The red blur is Job's sock-protected IV and board.)

When Job's body works harder (excited, angry, eating) his sats drop. His body can hardly profuse adequately even when he's at rest and he just doesn't have any reserve to work with at present.

I guess I have been surprised by how quickly his shunt function declines each day and even throughout the day. I am so glad he has been here all week! If need be (that is, if he keeps desatting so low and for so long or desats even lower), we will transfer to the CICU to increase his support.

We're no longer counting down the days but the hours until surgery.

23 hours to go.

Inpatient (Again)

Look where we are! The hospital! Again! River six, but a new room! Yay! Job just wanted to extend his tour of every room in the surgical unit and wanted a head start before surgery.

I'm giving up trying to get a good photo this morning...

Job was admitted yesterday with his lowest oxygen saturations yet. Sunday was a pretty rough day, with four episodes of emesis and declining sats. We deliberated about what to do, but he surprised us with an amazing night. We were hopeful he could make it through Monday, but he was satting around 68 (% of blood oxygenation) so Seth took him to the ER. We have been watching his heart function decline. His decreasing sats and increased cyanosis was expected. We just hoped he would make it through this week at home.

Job is, unexpectedly, responding to oxygen support. He needs his Glenn because his Sano shunt (placed as part of his Norwood at five days old) is too small for his now bigger body. What limited blood flow he is getting to his lungs is now being fully oxygenated and he's now satting in the high 70s with his cannula!!

We were supposed to have a 7-8hr pre-op appointment today but we're now doing all of his pre-op inpatient. We expect to meet with his surgeon today as well as a NP and anesthesiologist to give consent for his surgery.

I was really frustrated and disappointed yesterday, but today has been better. I think it will be hard to wait here in the hospital until Friday without the distractions of life at home. Job doesn't like his hospital bed either, but he looks so much better on oxygen that I'm very grateful we have that option. We had been so skeptical he'd make it through the week, but seeing him decline so sharply Sunday and Monday "helps" me be grateful for the opportunity to be here. Again.

It's amazing how quickly I forget to be grateful and instead focus on my discontentment. We have been given so very much, yet I still want more. And perhaps most of all, I want it on my timeline. This long journey with Job will, I'm sure (and I hope), be a very sanctifying one.

Making Memories

I took the boys to the fair today, to make a fun memory of an excursion together before the craziness of this coming week begins.



The boys are posing here, trying to look sad that they're in jail. (The new Pioneer Farm set up was so fun! We got to do so many of the things we've been reading about in Farmer Boy, like milk a cow and shave a shingle and churn butter!)

Seven days. SEVEN DAYS! This was Job's last Friday outside the hospital for a little while. Ahhh! I can't believe how soon his surgery is!!

School Started

School has started! It's going to be a busy year as Ezra and Isaac get used to doing their schoolwork again. Job will continue his pre-med education with, apparently, some tutoring on animals from Isaac prior to his upcoming "internship" at the hospital.

We've been working throughout the month of August with a soft start on our curriculum, but it's always a bit of a shock to get used to the new school year and I'm a bit apprehensive about the transition for Ezra and Isaac in particular.



We're homeschooling for many reasons, but our extracurriculars (like co-op and Sunday School and BSF) start on Monday. It's hard to move to new classrooms and teachers and be held to a regular schedule, but to do so with the added emotional context of your little brother in and (hopefully) recovering from surgery and your parents not totally present?

I know we'll make it through, but I don't anticipate it being easy.

Complicating everything is our roller coaster of emotions. Every morning we wake up and announce how many days are left until the Glenn (only 10!). We wonder, daily, if Job can make it 12 more days, 11 more days, 10 more days...

He needs this surgery so desperately! But taking him in and giving him up to, well, be sliced open, is a difficult task. I know that we have no choice, but it's hard. Really hard some days, some hours.